Congregate Sessions

The HSE reacted promptly and with apparent gravity to the abuse in Aras Attracta, exposed by RTE’s ‘Prime Time’ programme, once it was made aware of it.

The nine staff directly involved in the abuse were “put off duty” on a without-prejudice basis pending investigation, the matter was referred to An Garda Siochana and HIQA and “an independent chairman” was appointed to carry out a thorough investigation into Bungalow 3 in Aras Attracta.

Another review has been commissioned of the other Aras Attracta units, and a “system-wide programme of measures to ensure quality and safety” of all 908 residential centres for people with disabilities will be led by HSE National Director of Social Care, Pat Healy.

Health Minister Leo Varadkar said the abuse exposed was “vile, inexcusable, intolerable”, and supported the actions undertaken by the HSE.

HSE chief Tony O’Brien wrote to all HSE staff last Monday, saying that “the footage portrays practices, behaviours and attitudes which are not simply acceptable… and should not and will not be tolerated” and that they left him feeling “utterly disappointed and betrayed”.

Speaking to Sean O’Rourke yesterday, Mr O’Brien said he was “devastated… there was no excusing it, it was humanity at its worst”.

While the condemnation of the abusive behaviour of the staff in Aras Attracta by Mr O’Brien and Mr Varadkar is very important, their words and actions do not go far enough to address the bigger issues on hand.

First of all, it is not credible for the HSE to commission the investigation and review into Bungalow 3 and Aras Attracta. Not matter how independent the appointed chairmen are, they are commissioned by the HSE to investigate facilities run and funded by HSE.

We saw the lasting benefit of independent (not statutory) investigations into both Leas Cross and Savita Halappanavar.

For credibility, the review and investigation into Aras Attracta must also be independent.

Secondly, the HSE, with government-wide support, must act upon its own recommendations to move the 3,700 people with disabilities who still live in large residential settings out into the community. The 2011 report ‘Time to Move on from Congregated Settings’ is busy gathering dust, while thousands of people with intellectual and physical disabilities are left to age in large institutions.

The 2011 Programme for Government promised to introduce personalised budgets for people with disabilities. Moving people out of large residential settings and empowering them with personalised budgets would significantly contribute to a better quality of life for people with disabilities, as they or their next of kin would be making decisions about the type of care they receive.

While there has been much condemnation of the abuse of the residents in Bungalow 3 in Aras Attracta, people with disabilities are dehumanised all over the country, denied stimulation, daily activities, dignity and respect. The most basic human rights, such as being called by your own name and dressed in your own clothes, are being denied to people with disabilities every day.

HIQA is being much criticised for not picking up on the abuse exposed on ‘Prime Time’. Yet, HIQA did not go into Bungalow 3. It has only been inspecting residential units for children and adults with disabilities for under a year, so far having visited 800 of the 1,300 units.

HIQA’s inspection reports highlight many denials of the most basic human rights of people with disabilities. And as more inspections are carried out, more horrors will be exposed. But that’s the point of inspection regimes, they can never be expected to catch the behaviour laid bare on Monday’s programme.

These will only be addressed through a combination of a sustained, effective inspection regime, when residents, staff and family members blow the whistle and when there are good advocacy programmes in place. Aras Attracta makes a very strong case for more and better advocacy services for people with disabilities and any other citizens who may not be able to advocate for themselves. Legislation has been passed to empower independent advocates to visit residential settings but this needs to be instigated and the advocacy services need to be adequately resourced to act on behalf of people with disabilities.

Enda Kenny, how about trying to make Ireland the best little country in the world to be a person with a disability? Taoiseach, if you were serious about this, you would set up an independent investigation into the abuse exposed in Aras Attracta.

You would resource and implement the ‘Congregated Settings’ report so that people with disabilities can live in homes in the community and are not in hidden away in large residential settings.

You would act upon your own commitment to move towards personalised budgets for people with disabilities so that they and their next of kin can decide how best to spend the €1.5bn currently allocated to disability services.

You would resource and empower the advocates of people with disabilities so that those with the most profound disabilities do not remain silenced.

Finally, you would sign Ireland up to the 2007 UN Convention of People with Disabilities, long promised but not yet delivered.

We remain one of the few countries in the world not to have signed this.

Positive change in public policy in Ireland is often triggered by cataclysmic events. The ‘Prime Time’ investigation into Leas Cross led to the regulation and inspection of all public and private nursing homes. The death of Savita Halappanavar has put patient safety and quality of care at the forefront of health policy.

The expose of abuse in Aras Attracta can be such a turning point event.

Taoiseach, this is your chance to remedy the cruelty perpetrated upon Ivy McGinty, Mary Garvan and Mary Maloney in a state-run care home in your own backyard. Please use it.

The Disability Federation of Ireland has said there are more than 1,000 younger people with disabilities living in long term care such as nursing homes throughout the country.

The organisation says placing younger people, under the age of 65, into these settings is inappropriate for their health and social care needs and leads to social exclusion.

‘It’s like hell … you can’t go to hell because you’re actually in it … ‘

John O’Hagan, 58, has been living in a nursing home in Bray in Co Wicklow for two-and-a-half years.

John is a recovering alcoholic with diabetes and a liver problem. He was admitted to the home last year after a long stay in hospital.

He says: “It’s like hell … you can’t go to hell because you’re actually in it … but I have nowhere else to go.

“I’m well capable of doing things for myself there’s nothing wrong with me … I’m not handicapped, I can cook myself but I need a home which I haven’t got.”

John’s sister Bernie says the nursing home is an unsuitable environment for John to live in.

“He needs a home and he has been promised a home since all this started.

“John is well capable of going up town himself and when he goes to the council offices they either make false promises to him or they say they’re not available,” she says.

Bernie says that for John the days in the nursing home are very long.

“Apart from the fact that he helps the maintenance guy, but other than that its totally boring.”

There are over 1,000 people under 65 with acquired disabilities living in long term care such as nursing homes across the country.

‘There’s a kind of institutionalised madness going on’

The Disability Federation of Ireland says these people should be moved to new smaller-scale accommodation in the community.

DFI’s Chief Executive John Dolan described the situation as a scandal.

He said: “What you have to think about here is that these people have many many years of life ahead of them.

“Nursing homes are designed for frail elderly people, and the average age of admission for older people is in their mid-80s and the average length of stay is a handful of years.

“Whereas the people we’re talking about here could be looking at 20 years – there are people in their 30s and 40s in these nursing homes,” he said.

Mr Dolan said putting these people into nursing homes is against Government policy, which is to take people with disabilities out of congregated settings:

“You could have somebody in the HSE working hard to get a number of people out of congregated settings and into community settings and you could have a colleague in the same office trying to get a younger person with a disability into a nursing home. So there’s a kind of institutionalised madness going on.”

‘It was devastating for us really it was like a grenade coming in our door’

Anne’s husband, who is 55, was left with an acquired brain injury following a car crash two years ago.

“We are were just an ordinary family, I’d gone to work when I got a call to say that he had been in a car crash.

“It was devastating for us really it was like a grenade coming in our door and it affected not just my husband but all of our family, all of my sons.”

Anne was advised initially that a nursing home was a suitable place for him to go. She was adamant that she wanted to bring her husband home but it took nearly a year to secure a home care package.

“Nursing home care was recommended because my husband needs 24/7 care. The doctors at the time believed that this was our only option.

“I reluctantly applied for Fair Deal and asked to bring my husband home that Christmas with some adaptations to our home,” she said.

“I took nursing home care off the table in November 2014, because I realised he would be inappropriately placed, and I could care for him at home with the proper homecare package.”

“The HSE needs to put resources into supports that help to keep people in their own home,” Anne added.

‘There are no facilities just for young people who need care’

A Director of Nursing, who spoke to RTÉ’s Morning Ireland anonymously, was critical of the number of younger people living in nursing homes.

“I am not sure what the answer is but at present there are no facilities just for young people who need care.

“This problem is going to worse as alcohol related dementia is getting worse amongst the young (and) the hospitals have major issues with this and the numbers are increasing.”

‘They have no means of buying clothes as they have no money’

She also said that people who are in receipt of the Government’s Fair Deal Scheme are left with hardly anything to live on.

“The fair deal leaves people who are on a disability allowance with practically no money 80% is taken, now if they smoke or get 1-2 pints a day especially people with Korsakoff’s syndrome or where they have cognitive behaviour and cannot understand why all these pleasures are taken from them.

“They have no means of buying clothes as they have no money. I replace clothing items…this is not covered in the fair deal.”

For now people like John who have become “old too soon” wait in hope for the system to change.

He said: “I don’t think I’d last any longer in it – I’m fed up in it I’ll probably die in it because that’s the only solution.”

In a statement, the Health Service Executive said that not all people with disabilities are inappropriately placed in a nursing home.

The HSE said purpose-built accommodation would be needed to respond to the need of younger people in nursing homes so they can live independently.

The HSE said its remit is to provide support to these individuals – but it said it was not currently funded to provide that support.

The Health Service Executive has said it will need €240m in new capital funding to fully meet the new accommodation needs of almost 3,000 people with disabilities currently in controversial congregated settings, RTÉ’s This Week has learned.

Of this, around €19m is needed to meet the needs of more than 230 people currently living in large institutional centres, which are most frequently getting negative ratings from the Health Information and Quality Authority.

A 2011 HSE report recommended that the thousands of people with disabilities living in such large institutional settings should be moved to new, smaller-scale accommodation in the community.

The HSE’s vision is for people with disabilities currently living in the discredited institutional settings to live “ordinary lives in ordinary places”.

In its first full costing of the measure, it is understood the HSE submitted a 75-page report to the Department of Health in June.

RTÉ has learned key details of the report.

It is understood the €230m request is made up of an initial €79m, which the HSE says it needs to move the first three “strands” of around 990 residents into appropriate accommodation.

These include strand one, which relates to around 230 people living in the worst-offending institutions – as well as strands two and three – which relate to a further 760 people for whom new accommodation can be provided relatively quicker than in other remaining cases, albeit with less urgency required than in strand one.

It is understood the Department of Health is paying close attention to the fact that the HSE said strands one and two could be “accelerated” and may even begin immediately this year, if there is a capital allocation of an extra €40m made available, which would also include some marginal one-off costs.

It is also understood the department is keenly aware of the intense and growing pressure coming from HIQA in terms of the poor quality of many disability facilities, which it began inspecting under a new regime signed into force by Minister Kathleen Lynch in 2013.

The speed at which the re-accommodation process can be moved along depends entirely on how much and how quickly new capital funding is provided.

It is understood the remaining €160m covers a further 1,800 disabled residents currently in institutional settings, but this figure is provisional and has not been fully costed to cover all eventualities.

The standard and culture of care at many congregated institutions have been the subject of widespread criticism by the health standards agency HIQA, and the sector has been the focus of intense scrutiny, since an RTÉ investigations unit expose into the treatment of residents at the Áras Attracta centre in Co Mayo last December.

It emerged last week that as many as 20 disability centres are facing closure after HIQA found persistent non-compliance.

Care centres are run either directly by the HSE or via voluntary bodies funded by the HSE.

The HSE confirmed it had made a submission to the Department of Health and said it was not presently in a position to comment.

By admin|2015-12-16T10:51:04+00:00August 20th, 2015|News|Comments Off on Congregate Sessions